Hooray! I have had contact from the epilepsy clinic at the National Neurological Hospital about OHs reduction in medication and subsequent increased seizures. She listened to the whole story and seemed to understand exactly what I was talking about. She took the name of the local hospital, the name of the consultant that he was under at that hospital and OHs hospital number so that she could make investigations and said that it sounded like OH needed an increase in medication again. She is going to phone me back once she has contacted the local hospital.
Well done for being persistent and following this up.